Marrowforums - More time in between for transfusions

Hello,

I have had MDS for about 10 years. I took Procrit for about (3) years and then it stopped working for me. I tried "chemo" but it did nothing to improve my disease. So, I have been transfusion dependent for about (7) years.

In August, my doctor asked if I would be willing to try Procrit again since it had been years since it stopped working for me. This time Procrit worked against me instead of helping me. I developed "Hemolytic Anemia" meaning my own body was now attacking the red cells in my body. I was hospitalized and it took the Red Cross to type & cross my blood instead of the hospital. It was an awful situation where I had to take large dosage of Prednisone. I felt awful besides having to take weekly blood tests to be sure that I was improving.

In early January, a co-bowler asked me if I have ever heard of "Low Dose Naltrexone"?. He gave me a printout of the uses of the medication. I thought that I had nothing to loose since my transfusions was now occurring every (3) weeks or less. I asked my primary physician if she can write me a prescription, but her answer was "No". She did send me to a "Drug Addiction" department since Naltrexone is given to drug addicts to stop their cravings for whatever drugs they are addicted to. However, Naltrexone only comes in 50 mg. Anyway, I saw the doctor and I asked if I could take the drug at 4.5 mg for pain. (I crush the drug, add 50 cc of distilled water and syphon 4.5 using large syringe). He consented and he gave me (3) months supply. Meanwhile, my friend ordered Naltrexone on-line and we half the supply between us (Very pricey). I take 4.5 and I give my husband 4.5 for his Alzheimer. To make a long story short, on January 5th, I received (2) units of blood. Thinking that my body was still functioning like before, I scheduled another transfusion for January 29th, but I was given only (1) unit. Today, I got my CBC tests back and my hemoglobin was at 8.1, so this Friday, February 19, 2016, I will be receiving (2) units of blood. You guys do the math!

First of, I can't believe the strength that I now have. I can't believe that I only needed (1) unit of blood in between and in total of 45 days. I can only share what I have found that worked for me and I hope that the information I am sharing with all of you will help you too.

As for my husband, "Low Dose Naltrexone" helped him remember who he was before he was diagnosed with Alzheimer's. He is happier, he is easier to live with and he is more functional. (He was diagnosed over 9 years ago and he still knows everybody.)

Please do your research and good luck to all of you affected by MDS and for that matter affected by Alzheimer's too.